Reply To: Hospital change and unknown Neurologist
Trueblue, I’m in Australia and I have a few contacts in different states. I’m on the Sunshine Coast and being treated by a Neurologist in Brisbane, and receive infusions in a really top clinic in Buderim. I can relate to much of what you are saying, except for the IVIG. I believe it has stopped the progression of the disease. There is no cure, but there can be remission and due to the remitting and relapsing nature of the disease I have had a couple of tastes of partial remission, and I believe I could live with that and have a useful and independent life if the partial remissions become permanent.
I agree, there is certainly no point in continuing with a neurologist who you don’t trust.
Your IVIG intolerance problem may be simply related to infusion rate, or even something as simple as hydration or pre-medication.
You do need to make contact with some group closer to home to share information re neurologists and treatments.